The last time I posted, I had just realized that I’m very likely to have celiac disease. Odd as it sounds, I’m still hoping that I do have it – because then I will finally know what’s behind many of my health problems, and can actually do something about the whole thing!

Since then, I’ve been doing a lot of reading on the Internet. It seems that celiac blood tests only work if a person has been eating the type of gluten found in wheat (or rye, barley, spelt, and other closely-related grains) regularly for several weeks. I had been working on eating a greater variety of foods, so there had been quite a few days when I hadn’t eaten any gluten to speak of. Maybe this wouldn’t have made a difference, but I wanted to be sure the tests would show whatever there is to be seen. I started making a point of eating a couple of slices of spelt bread every single day (since I had stopped eating wheat when I started the Blood Type Diet a couple of years ago).

I made an appointment with our family doctor. Even before I finished giving her a synopsis of my family history, she was nodding her head, and when I got to the punch line, “My cousin was just diagnosed with celiac disease,” she said, “I thought so!” Then I was all prepared to take the “con” side in debating the necessity of an intestinal biopsy for diagnosis, but to my delight, her opening remarks ended with, “… and nowadays they have blood tests that are just about as good as a biopsy.” I told her about my decision to postpone the tests for several weeks while I “gluten up,” and she didn’t object. Hubby and I picked this doctor because she’s more open-minded than most (perhaps because she’s an Osteopath rather than an M.D.), and I continue to be impressed by her willingness to engage in genuine dialog.

After attending a meeting of a local celiac support group, I got to thinking about my spelt bread. I knew from baking that spelt gluten is different from wheat gluten. Not knowing whether this difference might compromise my test results, I decided to switch back to The Real Thing for the final six or eight weeks. I also increased my “dose” from two slices to four slices per day. That was two weeks ago, and my symptoms seem to be somewhat worse. I don’t know whether that’s due to celiac disease or blood-type lectins, but I’ll be glad when I can stop eating the stuff!

I’ve also been researching the available blood tests, which apparently fall into two categories: tests which are very sensitive but not very specific (i.e., they will detect nearly every case of celiac disease, but will also come up positive for a lot of non-celiacs); and tests which are very specific but not very sensitive (i.e., they virtually never come up with a false positive, but they miss a lot of celiacs). The general recommendation is to have at least one test from each category, which makes sense to me. If I happen to come up positive on both, that would really clinch the diagnosis.

The best of these blood tests rely on an antibody called Immunoglobulin A (IgA), which is a natural part of the immune system. Unfortunately, a small percent of the population has so little IgA in their blood serum that the usual tests are meaningless for them, and somewhat-inferior tests based on Immunoglobulin G must be substituted. Most web sites recommend verifying the presence of serum IgA only if the initial tests are negative or inconclusive, but that sounds pretty silly to me. I’m looking into having my serum IgA level tested ahead of time, so I don’t waste time and money on worthless-to-me tests (and don’t have to keep eating wheat to prepare for a second round).

This entry was posted on October 11th, 2007 at 04:29:00 pm and is filed under Carol (A).

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